Get Set with AAC: Mythbusting - Ep. 021
This week’s podcast continues our discussion on AAC and common myths around AAC use. Join us as we use Susan Berkowitz’s book “Make the Connection” to do some myth busting.
---- Links ----
Susan Berkowitz's website: https://susanberkowitz.net/
Episode 20: Ready, Set, Go! with AAC
Music: Simple Gifts performed by Ted Yoder, used with permission
Transcript
Denise: Hey there, fellow SLPs, today's podcast belongs to a category I'm calling "So You're a Generalist." If you're a generalist like me, then you treat a wide variety of communication disorders and maybe you've had clients you wished you could send to a specialist. Areas like AAC and stuttering can be so intimidating. But the more experience I have, the more I've come to realize that as generalists, we have the power and opportunity to see connections and patterns that underlie all communication disorders. Seeing these patterns helps us chart a clear path with complex disorders. We need this ability because those clients are going to cross our paths specialist or no specialist.
Dan: Welcome to The Mindful SLP, the podcast that explores simple but powerful therapy techniques for optimal outcomes. I'm Dan, here with co-host Denise. Today we're going to be further in our discussion on augmentative and alternative communication or AAC, Denise, you said last week that you personally categorize developing AAC into three parts that you call get ready, get set, and go. In our last podcast we covered get ready. Could you give us just a quick synopsis for anybody who may have missed last time?
Denise: Absolutely. And just before I do that synopsis, I want to add that at no point am I suggesting there's a certain criteria someone needs to meet in order to be ready for AAC. That's not what I meant at all by get ready. When I talked about get ready, I was referring to patterns of behavior and cognition that SLPs really can observe that can help them understand how to get their clients to be more effective at AAC use.
And we really talked a lot about helping clients learn to choose. Cause many, many clients who are non-verbal come in and they don't even know how to choose. So you can imagine how important that would be just to be able to choose between two picture symbols. Right. But at the same time, they should be using an AAC device for receptive language, meaning the parents and the family are touching the symbols to give receptive language input.
Dan: So it's really about getting everybody comfortable with the whole thing and learning how to choose. So this week we're going to talk about get set and what that means to you.
Denise: Well, what I want to talk about today with the get set is, AAC is complicated enough, let's not make it harder.
Dan: What do you mean by that?
Denise: So I've never had a client who used AAC, who was a beginning AAC user, let me see, or a potential AAC user who didn't have complex communication needs. Complex communication needs, it refers to AAC learners who have significant disabilities beyond just replacing speech.
So even just looking at that definition, Stephen Hawking could be considered someone with complex communication needs because of his physical disabilities. Right? Right. The same thing could be said about Martin Pistorious he's the man who wrote the book Ghost Boy, by the way, we reviewed that book in our podcast in December, Choose Your Hard.
But in light of AAC use these two men had far less complex needs than most of our clients, because, you know, they already had fully developed communicational language when they lost the ability to verbally speak. And so all they needed to do was learn how to transfer that knowledge to using their devices.
Man, what we've got, the things that make AAC complicated for me as a therapist are all those needs beyond just replacing speech.
Dan: That makes a lot of sense to me, give me some examples of what makes this so complex for your clients.
Denise: Well, besides just learning the ability to choose that we talked about last week, there was a lack of desire to initiate. There are inappropriate behaviors that develop, oftentimes because they can't communicate, not understanding the nature of language itself, how we structure language, attention problems, physical sensory challenges. I mean, the list goes on and on.
Well that's a really long, long list. I mean, I can see why you say this is complex.
I don't say that to intimidate us as SLPs, but to bring the point home that it's already complicated enough, so we shouldn't make it harder than it needs to be, but we often do. We have the very best of intentions, but we lack the knowledge sometimes of best practices. Maya Angelou said, do the best you can, until you know better, then when you know better, Do better. That's why I love the book Make the Connection by Susan Berkowitz.
Berkowitz is an SLP who has specialized in AAC use for many years, and this book that she wrote is my AAC Bible. I loan it to all the parents of the AAC users or potential AAC users because they desperately need this information. And I need it too. She wrote it for SLPs and for families. So obviously she sees the need for SLPs to know better so we can do better.
So after reading her book, I know better. I do better. I want to share some of that with you today. My favorite part of this book is chapter two, that she calls Myths and Misconceptions, and she really goes to town shattering so many myths about AAC. Today, I want to focus on just a few of those myths that can prevent us, or delay us from getting our AAC clients set on a path for really effective AAC use. And that's why I'm calling part two Get Set.
Dan: And for me, I like to call it myth-busting. All right, let's go. Give us an outline of these myths.
Denise: Okay. I'm going to focus on three today. One is about PECS, what we call Picture Exchange Communication System and how it isn't super great for AAC users. Another myth is that some clients are not ready for AACU, so we're not going to start them on it yet. And another myth is that they need to move through a hierarchy of systems. Okay. Those are three that Susan addresses, she addresses way more, but I've chosen these three because I have personal experience in stories to illustrate this.
Dan: Tell us about PECS. What is PECS?
Denise: So before I can really talk about PECS myths, I need to explain PECS itself. Okay. So PECS, as I said, stands for a Picture Exchange Communication System, and I've just got a quote here from the book, "Picture Exchange Communication System is a system originally designed to establish communicative intent in children with autism who had no intentional communication." So it involves the learners handing a symbol to exchange for what they're asking for. So if they can't, so if they can't verbally ask for it, they can hand someone a picture for it. So that's in a nutshell, kind of the beginning of PECS.
Dan: So I want a marshmallow, I gave you a picture of a marshmallow and you know, I want a marshmallow. Yeah. Pretty straightforward.
Denise: It would seem so, but it's actually not. I mean, there are a lot of things that can go sideways when we have a client who doesn't understand that intentional communication. I mean, it would seem easy to us, right? You want a marshmallow, you tell someone you want a marshmallow. If someone doesn't understand that it's really difficult sometimes.
And so that's why there's a specific protocol and training for PECS, it typically is a two day training for PECS. Um, it's a system for teaching a child to exchange, it's not the picture symbols itself, and a lot of people are confused about that. In my experience, a lot of people say they use PECS, but they don't have the specific training so they don't get the results they're looking for, which is communicative intent.
Dan: You mean, I can't just pick up a bunch of pictures and say, I'm doing PECS.
Denise: No you can't. And when parents tell me that their child uses PECS, I'm actually pretty skeptical about whether the child has actually learned communicative intent, whether it's actually been taught to them with the protocol that the PECS people developed.
It's really common for people to use the term PECS when they just mean they're using laminated Velcro'd pictures. So, like I said, PECS isn't great. But at the very beginning, it can be used to establish communicative intent. Now I don't use it. I haven't been trained in PECS, I just have really good success establishing communicative intent other ways.
SLPs out there, I mean, you don't need to be trained in PECS but we do need to understand what it really means. And now that we've covered that I can tell you about the problems with PECS.
Dan: It sounds like you just did.
Denise: Well, that is one of them, but I needed to explain that so I can tell the story. Okay. So one of the myths, many school districts subscribed to the idea that PECS is sufficiently robust. That's a quote directly from Berkowitz's book. That's the myth. Why? Well, there's two reasons. First one is PECS is initially limited to just requests. So that's one communicated function. And, um, how do we use our language? How many ways do we use our language? Way more than just requests. We greet, we comment. We ask questions. We negate something. We call attention to something so many functions beyond requesting.
Dan: You mean there's more to life than give me a marshmallow?
Denise: I'm going to tell you about a client of mine named Kelsey, and how PECS was kind of limiting her ability to communicate. Okay. So her parents came from a long ways away for two weeks of intensive prompt therapy, arranged housing and all of this. And when she came, it was immediately obvious that she wasn't going to be a good candidate for Prompt. So here they are for two weeks and she's a child with complex communication needs. She's non-verbal, so I thought okay, well, let's pull out my pictures. Let's see what she can do with picture communication. Her mom told me that she had previously used PECS. That is where they're trained to hand a picture to someone right, for what they want. But Kelsey had really poor motor control, she had cerebral palsy. So she was really fixated on this idea of having to pull a picture off. And I just wanted her to tap. I mean, I don't use PECS myself, I just wanted her to tap the pitcher to indicate what she wanted, but she just really wanted to pull it off.
And she couldn't even hand it to someone because her grasp would open before she could hand it to you. And it would just drop on the floor, which would frustrate her. And it was, it was so laborious for her. And I couldn't break her from as much as I showed her in, you know, just tap it, just tap it, I just couldn't break her from that.
Well, one day her mom was like, can we go outside? Cause she was acting a little bit tired and I thought, okay, let's go outside and play, cause she said she is going to be in Special Olympics for soccer. She is so good at it. So I grabbed some balls. I grabbed some bubbles. I grabbed some balloons and some pictures on a Velcro strip and we went outside and Kelsey's walker is such that it's open in the front and she has to hold on to handles on the side with her hands to support her body weight, and then her feet are free to move all around. So when I put a Velcro strip in front of her and her hands had to hold onto these handles, she couldn't pull a picture off. And she looked at the pictures, she studied them deliberately, and then she pointed with her nose very deliberately. I mean, it was better than we had ever seen her ability to really...
Dan: She would almost lunge out, I happened to be watching out the window while you guys were doing this outside. And she would lunge for the one that she wanted. And she was so excited to just choose that one.
Denise: I mean, we were all so excited and happy and she was zipping around, down the driveway and choosing bubbles and balls and different sizes of balls and putting two words together, and we were like, wow.
Dan: I mean, it was amazing to watch you two chase her.
Denise: Keep her from going into the street. But the fact is the whole idea of PECS, even though they weren't using it anymore, it was limiting her. And we just needed to explore different options.
Dan: And there was a time factor limiter for her because that physical part of PECS she couldn't do. But once she got past the physical part of just choosing and indicating the choice, then things were much faster.
Denise: Yeah, much faster, and I think she's a really good candidate for, um, what they call a head mouse or a head pointer. Since she was only with me for two weeks, we were just able to discover what she was able to do. And then it was up to the family to go back and say, this is what Kelsey can do, and this is what we need to explore.
Dan: So what's the second problem with PECS?
Denise: Text can become really laborious for reasons beyond just Kelsey's reason. So the symbols that you attach with Velcro to different places means that the symbols lack stability in a certain place. So think about the apps on your phone. Several hundred, and you've got them organized in boxes, right? Just so. And what if someone moved those around?
Dan: I would be forever flipping to try and find my right app and it would drive me bonkers.
Denise: And they take extra time. It'd be laborious, right?
Dan: You know, it's like trying to find an app on their phone, which I often do, and I'm trying to help you. And I can never find, of course, where your apps are in your phone, because I know they're there, but I don't know where, and so I'm just flipping all over the place trying to find them.
Denise: Yeah. And Susan Berkowitz even said, well imagine having a rental car and the brake's in a different place.
Dan: Oh, that would be bad.
Denise: So really skilled AAC users, they look for location as much or more than they look for the specific symbol and they get really fast because they know location, right?
Dan: Right. You'll know anytime you're searching, you're going to do that. Yeah. You got to break it down into that.
Denise: So it makes it visually easier and they can memorize where things are, but if you are using PECS where the pictures are movable, they always end up in different places. That's a drawback. And also you can accumulate lots and lots of pictures. Susan tells this story about a girl who was kind of petite and tiny, and she had this binder of PECS pictures that weighed almost as much as her. I mean, laborious, right? And this is a real problem. I had a six year old client who was nearly non-verbal when he started with me. His family had given up on AAC because he had been started with PECS, they just couldn't picture him lugging a big binder around. So he lost years, I mean six when he came to me and he learned how to be a capable AAC user, and I could show the family an alternative, and he eventually got his own device, but we really know the language explosion of learning is most effective in the early years, you know, up to three, think how much time he lost.
We know that the family did the family didn't have all the alternatives they do. I mean like school districts just say, okay, well they need, um, they're, non-verbal, let's start PECS. And whether it's actually used as it's supposed to be, which in his case, I doubt it was because it didn't have intentional communication when he started with me, but they just gave up on AAC altogether.
And that led to some behavior problems. So he had some really major meltdowns when he first started to work. They got better as he got better at communicating, and then I started to use a really simple communication device on my iPad, because I just want to just show the family, look, this is what he can do, and he could use it.
But then when he had to leave the iPad behind and go home, the major meltdowns started again because it was like I was taking his voice away from him. Because the family hadn't gotten a device yet. And that led to some really distressing times in the clinic, exploring your options right away, getting something for the client, so valuable. I mean, that was so hard for me to say, I got to take the iPad away. And while we're on the topic of lots and lots of pictures, so this is what Kelsey's mom told me the next day, the second day she came with me after we determined, well, we're going to see what Kelsey can do with pictures. She brought in her mom bag and she said, I just got overwhelmed with AAC. And she started pulling out all these Ziploc bags. She says, I've got pictures with snack time. I've got pictures for Storytime. I've got pictures for bedtime. I've got pictures for this, I got pictures for that, and bags and bags and bags of pictures. Well, no wonder she got overwhelmed. Yeah. So like Susan says, the amount of pictures can just overwhelm you.
I meant, she didn't have a big binder. And obviously...
Dan: It's like carrying the Oxford English dictionary around with you everywhere you want to go, so you could look up every single word before you say it.
Denise: Yeah, now Berkowitz does talk about a robust paper system that she likes. So you don't necessarily have to go the electronic route. You can read her book and find out about that.
Dan: Okay, tell us about the next not ready myth.
Denise: There are no prerequisites for starting an AAC system. Some therapists think they're not ready yet because they don't see them effectively using it, an AAC system. I said, well, you're not, they're not ready for an AAC system because they can't use it yet. But when a child is born we don't say, well, we're not going to talk to them yet because they're not ready to talk back to us. See that?
Dan: We talk to those babies all the time and we make funny sounds.
Denise: We presume competency, we presume they're going to be able to learn. So we talk to them. What we need to do is presume competency with our AAC client. And input the receptive language. So we're using it as they watch us use it so that they can internalize it. Now, sometimes you have to problem-solve, just like I talked about on the podcast last time. We problem-solve choosing, or problem-solve intentional communication, but you need to be using the AAC device, you don't say, well, they're not ready yet.
Dan: We'll never be ready until you actually get them going with it because it's just like language and is language.
Denise: And in Kelsey's mom told me that, well, the IEP team, they're thinking about using a four cell talker with her, but they don't think she's ready yet. Well, we saw when we were out in the driveway that she could use many more than four pictures. There's some problem-solving needed to take place. And it's not that she wasn't ready. And part of this problem-solving is looking at the whole child. So that's what we did with Kelsey, right? Right. When I was open to listening to the family, listen to the mom to just go outside.
And we were just thinking she was going to revive, but that's when the questions started being answered. So you got to look at the whole child. You've got to look at the whole family.
Dan: Well, that's awesome. Tell me about the last myth.
Denise: The last myth is that someone would need to move through a hierarchy of systems, and Susan Berkowitz actually says, well, learning multiple systems, that's harder. You remember when we watched that show, There She Goes?
Dan: Oh, the British comedy about a girl with learning disabilities. Yeah, it's a great show.
Denise: I don't know if I'd call it a comedy. It kind of tore at our hearts.
Dan: Yeah, it was hard for me to watch.
Denise: We've only watched a few episodes, but there are some things that really bugged me. The SLP is talking to the family about Rosie's AAC. And she talks about now, keep on using the PECS at home and she's also got this device that she's talking about, and right there, my mind's going what, two systems? And you can see that the family, and by the way, it's based on a true story. This is based on the struggles their daughter had. You can see that they were not having success even with intentional communication. Why does Rosie have PECS? And why does she have this other system? Why does she have two, when they're not even getting the basics down, one of the stories is they get so excited because I think she starts to shake her head no.
Now it's either nod her head yes, or shake your head no, but I think shake your head no. Kids always learn no first, right? Right. And they are so excited because to them, that is the first intentional communication she's used. That's what I gathered from the show. Well, they share that with the SLP and she just kind of deflates them.
She's like, oh yeah, she does that at school. And you could just see the deflation happening with the family. And the mom even said, Her therapist is so good, I shouldn't, what am I doing? What are we doing? We can't do this. Don't wear the expert hat. Okay. This is something I learned with my hand in training, but okay, so we are experts, but we, we really need to avoid wearing the expert hat and making the families feel like they are not the experts. They are the experts in their child.
Dan: They spend way more time with their child than you do.
Denise: They do. And we need to make them the experts with their own child. And just some of those things I saw in that show was the family involved in choosing how Rosie was going to communicate with the AAC system? Was the family trained? 'cause I remember that one scene where the mom was trying to find something on the AAC device and the therapist was like, oh, here it is, I have trouble finding it too. But she goes, boom, boom, boom, and there, she pulls up another page or another, another picture display on the device. And I'm like, wait a minute.
Dan: And the mom was left totally in the dust, and it didn't help mom at all.
Denise: Did they problem solve with the family? I'm just guessing not. Um, did they ask what it looked like at home? How does Rosie communicate at home? Okay.
Dan: The speech therapist in this show did not.
Denise: Yeah, that kind of frustrated me, but they were depicting what really happened to them in real life. So, and another thing is that Susan Berkowitz talks about is don't be afraid to make mistakes. The child will see you make mistakes and they'll realize that it's okay to make mistakes on my device. The family will see you make mistakes and they'll realize it's okay. I can play around with this thing. Yeah. You're always telling me because I'm not the computer expert, I'm afraid to make mistakes. Now he's telling me you can't break it. Just, just go try things. Well, that's what they need to do, if they have an electronic AAC device to experiment with.
Dan: Well, you don't do that to a small child, who's just starting to learn to talk. You don't say stop making those mistakes. You know, don't talk until you're 100% perfect. You let them play with making all sorts of sounds and making mistakes.
Denise: And so it makes it harder if you're too afraid to engage with the device and play with it. And it makes it harder, if you think they need to move through, you've got to do this and then you'll be ready for this device. And then you'll be ready for this device. No, let's just get them what, in our best judgment, is going to work for them long-term.
Dan: Makes sense to me. What do we move forward with in our daily therapy?
Denise: So I would say buy the book Make the Connection by Susan Berkowitz. And by the way, you might want to buy it on Kindle, which I have because I loan it out so often that when I need to refer to it, I often don't have my physical copy.
Dan: And they tend to not come back.
Denise: So, um, well we have lost one that way, but anyway, um, but that book really has everything that you need as an SLP to present a solid case for an appropriate AAC system for the IEP team unto families. It's also got everything you need really to get started as an SLP, and that's what I really love, I've got a roadmap and I know there's still things I need to learn. No matter what book it is, you know, they can't tell you everything, but if you just have a roadmap, then you can feel comfortable moving forward.
Dan: But it's a really good book written by a specialist, but it's written to the generalist or the parent, and really, that's something that was really helpful as a generalist is to find those things that can get you up to speed quickly, not to a specialist level, but at least so you're competent.
Denise: Yes, absolutely. Remember when you master the simple, the complex takes care of itself, this book really makes you feel like you can serve your clients with complex communication needs. And also Susan Berkowitz has a great website and we'll link that in the show notes.
Dan: Thank you for listening today. And we will be back where we will talk about go, see you then.
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